Feasibility of an Online Patient Community to Support Older Women With Newly Diagnosed Breast Cancer

被引:4
作者
Occhiogrosso, Rachel H. [1 ]
Ren, Siyang [2 ]
Tayob, Nabihah [2 ]
Li, Tianyu [2 ]
Gagnon, Haley C. [3 ]
Paz, Andia [4 ]
Freedman, Rachel A. [3 ]
机构
[1] Brigham & Womens Hosp, Dept Med, 75 Francis St, Boston, MA 02115 USA
[2] Dana Farber Canc Inst, Dept Data Sci, Boston, MA 02215 USA
[3] Dana Farber Canc Inst, Dept Med Oncol, 450 Brookline Ave, Boston, MA 02215 USA
[4] PatientsLikeMe, Cambridge, MA USA
关键词
Breast cancer; Older patients; Online support; Social media; Social support; QUALITY-OF-LIFE; SOCIAL SUPPORT; FUNCTIONAL ASSESSMENT; RELIABILITY; MORTALITY; NETWORKS; VALIDITY; MEDIA;
D O I
10.1016/j.clbc.2021.06.004
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
We assessed whether an online patient community was an appealing forum to improve older women's breast cancer treatment experience. Among 45 enrolled women, 2.2% met our feasibility endpoint (sustained use), although 17.8% met engagement criteria for >= 25% of study duration. Future interventions should explore ways to optimally support older patients, who have increasing access to technology while facing social isolation. Background: We conducted a feasibility study of integrating a free, online patient health community, PatientsLikeMe (PLM), into the neo/adjuvant care of older patients recently diagnosed with breast cancer. We assessed whether PLM was an appealing social forum to improve women's treatment experience during this stressful and often isolating time. Patients and Methods: We enrolled women ages >= 60 years with recently diagnosed nonmetastatic invasive breast cancer at a single center. Our primary endpoint was feasibility of patient engagement with PLM, with successful engagement defined as using PLM for >= 50% of the total weeks of one's chemotherapy course or 4 months (if receiving hormonal and/or radiation therapy). Participants were surveyed about their health, social support, and experiences. Results: During February 8, 2016 to June 25, 2018, 47 women enrolled; 14.9% were ages 71 to 75 years and 8.5% were ages >= 76 years; 63.8% received chemotherapy. Two women withdrew after consent; 45 were included in analyses. Overall, 1 (2.2%) patient met the feasibility endpoint, although 8 (17.8%) met engagement cr iteria for >= 25% of weeks on study. Over time, women submitted a total of >1200 posts to the "InstantMe" feature (rates how they feel) and >130 "MyFeed" stories. Evaluation of satisfaction with PLM was limited by the small number of end-of-study surveys. Conclusion: Although our online social support intervention did not meet the prespecified criteria for feasibility (required sustained PLM utilization), many engaged with PLM. Future interventions should explore ways we can optimally support older patients, who have an increasing access to technology while facing threats of social isolation. (C) 2021 Elsevier Inc. All rights reserved.
引用
收藏
页码:178 / 185
页数:8
相关论文
共 36 条
[11]   Learning from social media: utilizing advanced data extraction techniques to understand barriers to breast cancer treatment [J].
Freedman, Rachel A. ;
Viswanath, Kasisomayajula ;
Vaz-Luis, Ines ;
Keating, Nancy L. .
BREAST CANCER RESEARCH AND TREATMENT, 2016, 158 (02) :395-405
[12]  
Frost J, 2009, Chron Respir Dis, V6, P225, DOI 10.1177/1479972309348655
[13]   Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe [J].
Frost, Jeana ;
Okun, Sally ;
Vaughan, Timothy ;
Heywood, James ;
Wicks, Paul .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2011, 13 (01) :129-137
[14]   Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another's Data [J].
Frost, Jeana H. ;
Massagli, Michael P. .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2008, 10 (03)
[15]  
Fukui Skiko, 2003, Oncol Nurs Forum, V30, P823, DOI 10.1188/03.ONF.823-830
[16]   Breast cancer in older women: Quality of life and psychosocial adjustment in the 15 months after diagnosis [J].
Ganz, PA ;
Guadagnoli, E ;
Landrum, MB ;
Lash, TL ;
Rakowski, W ;
Silliman, RA .
JOURNAL OF CLINICAL ONCOLOGY, 2003, 21 (21) :4027-4033
[17]   Interventions to reduce social isolation and loneliness among older people: an integrative review [J].
Gardiner, Clare ;
Geldenhuys, Gideon ;
Gott, Merryn .
HEALTH & SOCIAL CARE IN THE COMMUNITY, 2018, 26 (02) :147-157
[18]   Interventions Using Social Media for Cancer Prevention and Management: A Systematic Review [J].
Han, Claire Jungyoun ;
Lee, Young Ji ;
Demiris, George .
CANCER NURSING, 2018, 41 (06) :E19-E31
[19]   Breast cancer and social environment: getting by with a little help from our friends [J].
Hinzey, Adam ;
Gaudier-Diaz, Monica M. ;
Lustberg, Maryam B. ;
DeVries, A. Courtney .
BREAST CANCER RESEARCH, 2016, 18
[20]   Predicting Chemotherapy Toxicity in Older Adults With Cancer: A Prospective Multicenter Study [J].
Hurria, Arti ;
Togawa, Kayo ;
Mohile, Supriya G. ;
Owusu, Cynthia ;
Klepin, Heidi D. ;
Gross, Cary P. ;
Lichtman, Stuart M. ;
Gajra, Ajeet ;
Bhatia, Smita ;
Katheria, Vani ;
Klapper, Shira ;
Hansen, Kurt ;
Ramani, Rupal ;
Lachs, Mark ;
Wong, F. Lennie ;
Tew, William P. .
JOURNAL OF CLINICAL ONCOLOGY, 2011, 29 (25) :3457-3465